Severe difficulties with eating in ME/CFS

[Jonathan Edwards]

A problem is that nutrition is not being assessed, a dietitian will not be involved, and these guidelines remain unused. I appreciate I might sound like an advert for dietitian talking points here, but it is so frustrating the number of people who get fobbed off when it comes to eating because it is not being taken seriously by healthcare.

This is clearly an important element. However, the literature from the British Society for Gastroenterology suggests a deliberate disincentive to use feeding support measures in people with ME or 'MUS'.

 

[Jonathan Edwards]

Same in Norwegian, "eating disorder" is anorexia/bulimia/overeating. For anything else we talk about "eating difficulties".

Eating difficulties sounds a reasonable way to cover it.

 

[Forestvon]

I thought I read somewhere a problem could be the angle at which the tube was inserted in severe case of ME if they have bad orthostatic intolerance. I don't know if there are minimum safety standards in uk or if up to individual doctor

 

[Midnattsol]

I think that is too general. It could include not being able to get to the shops - and for some probably does. We need an agreed description of the sort of problem that occurs despite lots of people being around offering food and can lead to starvation.

Not being able to go to the shop is something that put patients in the "risk of malnutrition" category, as is being unable to prepare food. And it's also the level of risk and the length of time this risk is assumed to be present that is used to decide whether for example tube feeding should be used (typically if problem is likely to persist >2 weeks nutritional support in some form should be considered).

This is clearly an important element. However, the literature from the British Society for Gastroenterology suggests a deliberate disincentive to use feeding support measures in people with ME or 'MUS'.

I think this is connected, both knowledge and attitudes towards nutrition as a field is low many places in healthcare (extrapolating from Norway here). This together with attitudes about patients needing to pull themselves together, "reclaim daily activites" etc. will foster such ideas. And while I am certain there are dietitians who would agree with this view, I also know many who argues for more nutrition support to give patients "a break" from whatever is going on with the food so they will be at a better place to work on it later.

 

[Jonathan Edwards]

I think this is connected, both knowledge and attitudes towards nutrition as a field is low many places in healthcare (extrapolating from Norway here). This together with attitudes about patients needing to pull themselves together, "reclaim daily activites" etc. will foster such ideas.

Reading the BSG literature it seems that things go much further than ignorance and social attitudes. A case is being made for specific withdrawal or withholding of feeding tubes in the ME/MUS category based on bogus BPS theorising and new invented diagnostic names. It is pretty worrying stuff.

 

[Hoopoe]

Do you know who is creating and promoting these theories?

 

[Jonathan Edwards]

Do you know who is creating and promoting these theories?

I have not delved into that. They are being propagated by British gastroenterologists under the auspices of their professional body.

 

[Hoopoe]

Something that might explain the differences in opinion in these and other matters related to ME is very different views of what ME is.

That other ME, that to us sounds like a gross misunderstanding, might really exist. And maybe these guidelines were developed with that kind of ME in mind.

 

[Midnattsol]

For those interested, guidelines used by dietitians (and others who want/need to understand nutritional needs of patients):

Guidelines used in Europe can be found at ESPEN: https://www.espen.org/guidelines-home/espen-guidelines
American guidelines at ASPEN: https://www.nutritioncare.org/

As has been noted in the thread already, most of these guidelines are based on "best clinical practice", not research.

I think this is an important part from the ESPEN guideline on home enteral nutrition:
"HEN should be offered to patients at nutritional risk or malnourished who cannot meet their nutrient requirements by normal dietary intake, who have a functioning gastrointestinal tract, who are able to receive therapy outside of an acute care setting, and who agree and are able to comply with HEN therapy with the goal of improving body weight, functional status or QoL. (R1, Grade GPP, strong consensus 97%)"

This could apply to pwME as it is not dependent on diagnosis.

 

[Jonathan Edwards]

There are 1,117 papers on PubMed on this DGBI diagnosis (disorders of gut brain interaction).
Most of it is about microbiota affecting the brain.
It has been going for five years at least.

It looks as if the gastroenterologists have invented a fairy story to allow them to publish rubbish papers (and dump the patients on psychologists) just like the neurologists

 

[Trish]

So it looks to me that we should be looking to dietitians for help, with their training being much more relevant to our situation, rather than gastroenterologists.

 

[RedFox]

But surely the whole point is that nobody actually knows anything about the psychodynamics
The gastroenterologist writing about this claims that there are eating disorders without body dysmorphism. I strongly suspect that is right.

ARFID is an eating disorder where someone can't eat many foods due to sensitivities to certain flavors, colors, or textures. It's common in autism and has nothing to do with body image.

 

[Jonathan Edwards]

So it looks to me that we should be looking to dietitians for help, with their training being much more relevant to our situation, rather than gastroenterologists.

I think once you get to options like tube feeding, which are what are being denied, the decision on placing a tube has to involve a physician. I may be wrong but I think there is a need to tackle the gastro side.

 

[CRG]

I think once you get to options like tube feeding, which are what are being denied, the decision on placing a tube has to involve a physician. I may be wrong but I think there is a need to tackle the gastro side.

I agree.

I'd go back to my earlier suggestion about having a two pronged approach - the immediate issue revolves around those small number of cases where the patient is on the verge of being hospitalised or is actually in hospital and where enteral feeding is deemed necessary or very likely to be necessary, in those cases (in the UK) there will be a physician led team following national and professional guidance, it those teams that need to be engaged, although in practical terms the lead physician will likely have the greatest influence.

Baxter, Speight and Weir (2021) bemoan the lack of take up of (CPD) Module on ME:

"The uptake was very poor with fewer than two thousand clinicians taking the module to date. Medical education around ME needs to be made part of the core curriculum for undergraduate students and should also be included in postgraduate education. It is necessary for the clinician to recognize ME/CFS as an organic illness. It can only be hoped that the new NICE Guidelines aid clinicians’ understanding and provide guidance on dealing with nutritional problems such as those described in this series."

It seems clear that the general issues around ME/CFS are going to take a considerable time to disseminate through the NHS and achieving a broad consensus on nutrition in ME/CFS has to be a medium/long term aim - so we have an urgent need for some kind of intervention affecting a small number of patients in critical or near critical condition, and a wider problem of consensus and education. Both are important but in this case urgent would seem to define the priority.

This isn't an easy time to be trying achieve change in in-patient management in the NHS*, and I'd suggest that aim should be to achieve some level of acceptance of management specific to ME/CFS when it comes to tube feeding, rather than attempting to get a perfect all patient, all circumstances set of rules.

*Junior doctors in England to strike for 72 hours in March

 

[Tom Kindlon]

An example of the biopsychosocial school approach and influence:

 

[CRG]

An example of the biopsychosocial school approach and influence:

I can't see what is wrong with that apart from the assertions about "CFS/ME" and weight loss, but severe weight loss in anyone should be basis for referral to a full gastro team for assessment, not just to a dietician.

 

[Tom Kindlon]

I can't see what is wrong with that apart from the assertions about "CFS/ME" and weight loss, but severe weight loss in anyone should be basis for referral to a full gastro team for assessment, not just to a dietician.

The part about weight loss is hardly insignificant:

We do not know of any reliable or replicated evidence that severe weight loss, indeed any weight loss at all, is a part of CFS/ME.

The aim and net effect was to get the mention of weight loss removed from the guidelines.

And by saying weight loss is not part of CFS/ME, it increases the chances that it will be psychologicalised/blamed on a patient's maladaptive behaviour/similar

 

[Hutan]

And I'm not suggesting that there is no functional or physical problem in ME. I am quite sure that people with ME who cannot eat cannot eat.

Re Speight and Weir:

They emphasise that the cause of inability to eat is physical, contrasting it with psychological.

Surely that's an understandable approach though, if you are trying to get specific investigations into physical problems, or when faced with people who don't believe in pandering to a patient with what they believe is a problem that could be fixed if the patient just (consciously) thought differently?

That is, when they are dealing with people like those you describe below:

It is clear that they hive off cases for psychological intervention despite low quality or very low quality evidence.

I too get frustrated when people claim that there is stronger evidence for a 'physical cause' of ME/CFS than there is. However, I think if we were advocating for specific patients with ME/CFS at risk of death and facing a decision-maker who thinks that people with a psychological reason for not eating should be denied assisted feeding, we too might say what Weir is saying. Which is essentially I think, that the difficulty eating is not a problem that can be fixed by the person consciously thinking better; they cannot be fixed by talking therapy. (It might be fixed by making the brain work better, but that is different). I don't see what Speight and Weir have been reported as saying here is terribly unreasonable given the work that they are doing. I think they are mostly saying, 'psychological approaches: talking therapies and games of withholding food won't fix this person'. I think they have probably seen enough cases first-hand to say that.

I really don't see the advantage of us labelling the eating difficulties that are part of severe ME/CFS as 'eating disorders'. If a person can't eat because they don't have the capacity to chew, I'd rather see that termed an eating difficulty. 'Eating disorder' means to virtually everyone who hears it 'could be fixed if the person thought differently about food'. If the person has a perception of a lack of energy to chew or to digest, then there is probably a perception of a lack of energy for walking to the bathroom. So now the person has a walking disorder as well - another way of putting it is a functional neurological disorder - all also supposedly amenable to being fixed by talking therapy, even though the evidence for that is very weak.

I can see the problem but I think it may be important not to be squeamish about this. Lives depend on it.

I don't think that suggesting that 'eating disorders' are part of the spectrum of ME/CFS symptoms is going to stop people being harmed by the medical system. Quite the contrary, I think it will further reduce the likelihood of all of our symptoms (ME/CFS-related or not) being taken seriously. I think it will result in families withdrawing support, and people struggling to get welfare support and make insurance claims. Because the assumption will be that we could be well if we wanted to be; if we accepted we have a psychological problem and underwent psychological treatment.

People treated for craniopharyngeoma can rightly be said to have disordered eating behaviour. Why not ME?

Why not ME? Because right now, we don't know what causes ME/CFS. We can speculate, but none of us really knows. That lack of knowledge makes us easy pickings for people who think we just need CBT to fix our faulty illness perceptions. We don't have a tumour, or the hole left after the excision of the tumour, to point to, to say 'no, the difficulties I have won't be fixed by a course of mindfulness and a reframing of my (non-existent) childhood trauma, so, stop making my medical care and welfare support contingent on me doing that'. We can argue about what words should mean, even what they do mean to some people, but these words like 'functional neurological disorder', 'eating disorder', they have established meanings among very many people that imply that certain psychological treatments help. I don't think we are going to manage to change the perception of them.

We need research into the various reasons why some people have difficulty eating in ME/CFS. If it turns out that gastroparesis or probably more accurately slow intestinal motility isn't a thing in ME/CFS, fine, we can work on stopping people saying that it is.

 

[SNT Gatchaman]

I think it might be helpful to compare with cystic fibrosis. When CF is advanced there are multiple body systems affected. Most people think about lung disease and bronchiectasis, but the GI tract is significantly affected. Tube feeding is well established in this scenario.

Apart from well known issues like inability to absorb and digest appropriately due epithelial transport impairment and pancreatic insufficiency, mechanical problems handling abnormal gut content, there can also be a significant higher workload of breathing that means eating competes with respiration. These patients are often on overnight continuous low-rate tube feeding to ensure they get adequate nutrition.

See eg —

Nutritional Care in Children with Cystic Fibrosis (2023, Nutrients)
Improving nutrition in cystic fibrosis: A systematic literature review (2022, Nutrition)

 

[hibiscuswahine]

I think ME is a biomedical illness and the pwME should be under the care of a physician with consults with gastroenterology (and psychiatry/psychology if there is any need for it), I didn’t suggest otherwise.

A liaison psychiatrist is there to exclude psychological and psychiatric illness and give what ever support they can to the medical team. Often the medical team have overlooked many things due to drug interactions, restrictive diets etc and not just a psychotic disorders, J.E., but other psychiatric disorders, there is a diagnostic sieve just like any other specialist applies to a case.

And despite what some people think - they don’t just sit down and start doing a psychodynamic formulation and enquire about early childhood trauma or any abuse as a routine event. Nor do they sit down and start advising GET and doing CBT for ME/CFS. People seem to have a very skewed view. Maybe this is a UK thing arising from certain hospital trusts notorious for their treatments and research. I don’t have experience of these events in my country but I do know there is severe food poverty on disability, which doesn’t help people get quality nutrition, but also a lot of their income is re-routed into excessive supplementation in some pwME.

CL psychiatrists are very busy in a hospital looking after MH clients who get admitted and assessing, primarily, people’s delirium and cognitive disorders and any difficult or concerning behaviour referred by medical and nursing teams like violence and refusing treatment because of a psychiatric disorder

I do not think they are a useless part of the Care Team for a pwME.

Physicians and the sub-speciality of Gastroenterology and many staff can find it very distressing, as well as the family and the pwME, because they are unable to eat and losing weight.

CL teams (psychiatry, psychology and mental health nurses) often provide support to the pwME, their family, support network, all the staff involved of all disciplines. They are “liaison” as they work with the medical staff and the person/family, especially if conflict arises about the wishes of the patient and their family and often have to have clear but assertive words to the medical team, advocating for the patient/family.

I do think trying to have a clearer and more consensus understanding of the main pathophysiological mechanisms (that we currently know) would be advantageous.

edits:typos